newbie and wife hello

[billyntish]

I was diagnosed 2 days ago after a long year of tests and many different answers to my problem. of course I am scared and have so many questions. my wife will be doing the typing as I am already having much difficulty getting my hands to do what I want. what kind medicines are you on? they are giving me Elavil for sleep I am have certain nights that I feel like I am suffocating and stand to breath. So much fear.

 

[KimT]

Hi Billy,

Sorry you are here but welcome. This forum has so many nice, helpful members.

Are you using BiPap to help with your breathing?

I take Remeron for depression and sleep. It works well for both. I'm on a ton of supplements but no prescriptions for ALS. I have some Valium to help with cramps and medical cannabis.

 

[billyntish]

thank you for your fast response! we live in ga no medical pot my husband would try it no bipap i don't even know what that is..

 

[lgelb]

Sorry you guys have to be here, Billy & Tish.

Is your clinic in Jacksonville, ATL...?

Kim is right, you should ask about a BiPAP (a machine that helps you breathe better while you are sleeping, or any time you need it). It can take a little getting used to but is well worth it if you need it. You can call or email the clinic coordinator between appointments to ask about things you need -- it's very common to need to do that in ALS.

Even though you may receive care in FL, we would encourage you to register with the Georgia chapter of the ALS Association, and take advantage of whatever resources make sense for you.

We would love to hear more about you and your husband -- feel free to introduce yourself a bit more.

Best,
Laurie

 

[affected]

So sorry to welcome you - fear is certainly a very normal reaction. Things will get a little easier, honestly that first month is a terrible time of shock.

We will talk you through lots of stuff, one thing at a time. Don't try to read too much or you will scare yourself silly - I really did that when my husband was first diagnosed and it was awful.

Bipap is a breathing machine you use a mask of various kinds, kind of a like the machines used for sleep apnoea.

You problems breathing may be related to the ALS affecting your diaphragm, or it may be anxiety as you deal with the diagnosis.

Will you be attending an ALS clinic? They will help you with these things, and it sounds like you need an appointment with someone fairly fast to get a few immediate things sorted.

 

[wishmobbing]

You've come to the right place for info, questions answered and heartfelt support and at times a good laugh. So welcome Billy and Trish!

There's good reason to be scared but knowing what's happening to you both will help you a great deal with that. Also you'll get solid advise from so many different people here. Some annoying little problems really can be solved in a minute. So please ask questions whenever you feel like it, no matter how big or small the trouble you're having.

The fact that you're sitting together, introducing yourself to one of the best places on the internet, looking for support tells me that you're tackling this monster already.

Billy, there is very fine technology to use a computer with even though your hands might fail you. Many users here write with eye gaze and other gadgets. My PALS (my boyfriend with ALS) is right now trying to get a headmouse approved. If speaking is no problem voice-to-text is great. I use it myself on my smartphone with the Google keyboard (gboard?) all the time.

Trish, if you like you can also create an account of your own. Caring for someone with ALS it can be hard sometimes to relate to even close friend and family how you feel. Try to take them with you by telling them how you feel and why. But sometimes that too is work and you can just drop in the CALS subforum, where caregivers give support to each other, for a rant or a cry. We get you immediately.

Sending you strength to get through the initial shock!
Wish

 

[Chincoteaguer]

Hi Billy and Tish;

In relation to the breathing machine my wife got hers about 7 weeks ago although she had no apparent breathing problems. The Dr. wanted her to use it 4 hours a day. She was unable to do this because the nasal attachment was uncomfortable. Fortunately she continued using the device in short increments and it is no longer uncomfortable. She has not yet used it for sleeping at night but I think we will start tonight. After a very restless night she is now on her breathing machine and resting peacefully. If the Dr. and pulmonary nurse had not insisted that she use the device early she would really be struggling now.

 

[billyntish]

I am going to the va in Gainesville Fl we used to travel to the Tallahassee va but since the als is now the official diagnosis they want all the care done there. The trip takes us all day my legs cramp and the 188 mls one way is like a trip to hell. my symptoms started as body wide cramping all day and night I had an emg and they said it was cramp facilitation syndrome. 3 mos later I am drooling like a st Bernard unable to put on a pair of shoes and an entertainment for anyone that likes to watch the twitches that occur now where the cramps were before. I was placed on tegratol in Nov but now after the als news they discontinued. I am waiting to see a pulmonary doc since I told them at night I feel like I cant breathe and have to stand up. I worked as a motorcycle mechanic and loved to ride but they said no more driving. I have clueless what is going to happen a time frame I have lost 30 pds since Christmas and now have the hollow appearance of a dead man. preparing I guess for the future, I felt like I was always the type of man that had his shit together but now I feel like I am smothering in it.